A Long Road to...now.

I thought that was the worst of everything, that one night being totally embarrassed at a restaurant and feeling like a wuss. I thought the rushed pelvic exams in front of swim coaches and the crying in an ER waiting room would be the worst. And then the endometriosis actually showed itself. I had five more cysts rupture in the next four years. One while I was actually swimming. I could hardly get out of the pool. I switched birth controls about every 4 months trying to find one that would Actually stop my bleeding. I would get awful cramping in my pelvis when I tried to swim (which was twice a day most days), and the back and leg pain was contributed to herniated discs, but we think now that the endo probably exacerbated it. Finally, when I decided that I would retire from swimming and try to move on with my life, we looked into actually doing something about this "endo". I sought help from specialists at the Stanford Medical Center to no avail. But through the grace of God, a teammate's father was the head of anesthesiology at Stanford Hospital and knew Dr. N, a very busy and world renown endo surgeon. He saw me right away and agreed to do surgery within the month. That was June 2005, two weeks before my college graduation. The lap showed stage 4, with adhesions nearly closing off both ureters, and covering almost every organ in my abdomen. Half of my right ovary was removed due to cyst involvement, but both fallopian tubes were functional. The surgery took some time to recover from, and I had to stay in the hospital for an extra couple of days due to problems with my bladder function from the ureter involvement. But after about 6 weeks I was doing pretty well. I started immediately on another course of BC after refusing the Lupron (those side effects sound horrifying). After about 3 months I started to feel like I could live again. I didn't have another cyst rupture for a year and a half, and the pain was minimal for almost that whole time. After that, it started to creep back into my life again.

About 8 months after my surgery I started swimming again recreationally, and then about 3 months later decided to swim full time to try for the 2008 Olympics. It was May 2006. I was almost done with my Masters degree and couldn't wait to put my all into training. Once the cyst ruptured after my surgery, things started falling apart. I moved back to Arizona to focus on training, but I would get the pelvic cramping if I really tried to push myself during swim practice. The breakthrough bleeding got more persistent. I was managing it all pretty well until about December 2006. I started feeling constantly fatigued. I couldn't make it through an entire practice anymore. My muscles would shake, I would fall asleep eating, I was always thirsty. I decided that enough was enough and I finally went to see someone about it. My PCP thought I might have diabetes and sent me in for a myriad of blood tests. Nothing came back positive, this was not the first time that's happened- as those of you with chronic illnesses surely understand. So I kept pushing, thinking I was nuts, and of course feeling like a wuss. When I injured my back again at a swim meet in March of 2007, the thought of trying to swim through all of this again was too much. I gave up the dream of the Olympic games and started focusing on figuring out what was wrong with me.

An extensive thyroid panel showed elevated anti-thyroglobulin antibodies. Normal thyroid panels don't test for this, only TSH and T3/T4 levels. My antibody level was high, which means my body was attacking my thyroid. For some reason, my thyroid hormone levels were showing as normal, so my body was fighting everything off, but I found out that with the antibodies comes the diagnosis of Hashimoto's disease. Don't you love the sound of that?

Hashimoto's disease is a roller coaster of thyroid activity. It starts out with the antibodies increasing, then once they attack, the thyroid over activates causing hyperthyroidism. Then the thyroid slows down causing hypothyroidism. This swing can go on for any amount of time, sometimes a lifetime. But in most cases, the body kills the thyroid which will cause hypothyroidism. This can be treated with drugs, replacing the hormones the thyroid normally produces. Not an exact science though, and the drugs can cause serious swings in hormone levels. But until my hormones show a constant hypothyroid, they won't treat it. For now, I just swing back and forth. From cold and tired, gaining intense amounts of weight one month, to hot, jittery, hyper, and dropping weight unaided the next. At least it was nice to know this was happening instead of feeling confused. But still nothing I could do about my present situation. About a month later they wanted to do a routine ultrasound of my thyroid to make sure it wasn't enlarged. They found two masses that were suspicious which sent me into more tests and a biopsy of my thyroid. Luckily, I got the all-clear, just wait and see. That was December 2007.

In April 2008 I got a promotion at work, and all I could think of was how scared I was that I would have to miss work because of my pain. The abdominal pain was getting worse, and it made me tired and left me feeling at times emotionally unstable. I wasn't going to be able to be in my new position if I was staying home from work in pain, or crying because I was uncomfortable. I decided to go back to Dr. N in California to see what he thought about having another surgery. He agreed that it seemed the endo had come back and another surgery could help. I was excited to feel better again.

I had the surgery at the beginning of July 2008 in California and flew back to Arizona five days later. I had stage 4 endo again, but not as bad as the first lap showed. Only one of my fallopian tubes works now, but they cleared everything out and felt confident about my chances of reproduction for the future. Two weeks later I was back at work and doing pretty well. About 5 weeks later I started really moving around again and getting some light exercise. The first day of my first period after the surgery I ended up in the ER with severe chest pain, pain up under my rib cage on the right side that radiated to my shoulder. It was a lot like the gas pain after the surgeries, but sharper under my rib cage. All of the tests came back negative, CT scan, ultrasound- everything looked fine. They sent me home. The chest pain went from about an 8 to a 4 over the next three weeks until it shot back up to about a 6-7 a month later. All of this time I had not been taking any BC. I wanted a break from the constant bleeding. I thought if I just went natural for a while it would do my body good. That was my biggest mistake. The chest pain dropped back down to a 3-4 about a week later and then I started getting a very uncomfortable full feeling in my abdomen. I had sharp pain all over the right side of my lower abdomen. A few days after that feeling started I got a UTI that wouldn't go away with antibiotics. A CT scan revealed a 5cm cyst in my right ovary and possible kidney stones. I started on BC right away to avoid any growth if it was an endometrioma. An ultrasound a week later showed a 6 cm hemorrhagic cyst, and we decided to wait a few weeks to see if it would absorb or (probably) rupture. 19 days later it ruptured. That was a week ago.

This whole time I've been in correspondence with Dr. N's fellows at Stanford via telephone and they've been very helpful. They think that the chest pain is diaphragmatic endo and want me to keep up with the BC to try to get through it. But I needed a doctor out in Arizona I could work with more closely. So I started going to some GYN's out here a few weeks ago and I think I've found one- Dr. RH. She, unfortunately wants me to start Lupron, but was very patient with me and understanding of my symptoms and the emotional turmoil of all of this. She spent a long time talking to me and assured she would call me with more information once all of my charts from my previous docs and Dr. N come in. She also thinks the chest pain is diaphragmatic endo and thinks the Lupron will help.

Now it's the Lupron discussion. What a controversy! I've had doctors telling me to try it for five years now and I have always said an enthusiastic "Are you out of your mind?!" I've read all I need to read about the side effects, not a chance! It wasn't until this diaphragm pain came along that I've actually considered it. Dr. RH feels that burning off endo on the diaphragm is far too dangerous, although Dr. N has done it and wrote a paper on it. But either way, I couldn't get more surgery so close to my last one. So it's either BC or Lupron. And BC just hasn't passed the test.

So I'm deciding to go ahead with the Lupron, side effects and all, in hopes of getting this chest pain to subside at least enough to go to work and exercise. I haven't been to work in three weeks- just what I was afraid of. And sitting around waiting to get better is doing nothing but make me feel depressed and alone. It's time I do something about it, at least mentally I'll know I'm trying and can maybe get up and move around a little.

The long road until now has been taxing, but I'm optimistic about my chances of living a happy life (not pain free, not normal, but HAPPY). I'm surrounded by supportive people. My family has always been a source for encouragement and an advocate for progress for me and my well-being. They support me and love me unconditionally, and I question how they do it all the time! And my boyfriend is absolutely unbelievable. Who would have thought that a man could bring me so much happiness in the midst of such anguish? He's my light. I feel blessed to have so much love, I've been blessed since the day I was born. I know there's a plan for me, and while I know I should just give in and let it happen, I get so confused sometimes. Hashimoto's and Endo both cause infertility. Why would God let me want to be a mother so badly and then let all of this come, too? But I guess it's the tests and the trials that make the blessings such...well, blessings. :)

So here it all starts. I'll keep you updated on the process of starting the Lupron, the side effects, the next steps, and everything I'm feeling with all of it. If anyone out there has any experiences like mine, please reach out. I really hate feeling alone in these diseases.